NCT06123091

Exploring Patient Reported Outcomes in Inherited Ichthyosis

• Status: Unknown
• Phase: —
• Study type: Observational
• Enrollment: 20 (estimated)
• Sponsor: Maastricht University Medical Center · Academic / Other
• Sex: All
• Age: 16 Years
• Healthy volunteers: Not accepted

Summary

The goal of this observational study is to learn about the presence of extracutaneous manifestations in patients with congenital ichthyosis. The main question it aims to answer is: \- Do patients with congenital ichthyosis experience extracutaneous manifestations? Participants will fill in questionnaires in which the investigators will explore whether patients experience extracutaneous manifestations, and if so what these manifestations entail. Examples of such questions are whether patients experience (joint) pain or whether they experience hindrance due to their complaints.

Detailed description

There is only limited knowledge about extracutaneous manifestations in patients with congenital ichthyosis. With this study, the investigators aim to identify extracutaneous manifestations with questionaires based on patient reported outcomes. Secondary research questions include: * What is the prevalence of joint complaints in patients with congenital ichthyosis * What is the influence of ichthyosis on the quality of life patients experience Furthermore, the investigators aim to discover knowledge gaps in current patient management and possible areas of improvement in patient care towards healthcare professionals.

Conditions

• Congenital Ichthyosis

Interventions

Type	Name	Description
OTHER	Questionnaires with patient reported outcome measures	Questionnaires to gain insight of the prevalence of extracutaneous manifestations and the impact of the disease on the quality of life.

Timeline

• Start date: 2023-09-01
• Primary completion: 2024-10-01
• Completion: 2024-12-01
• First posted: 2023-11-08
• Last updated: 2023-11-08

Locations

1 site across 1 country: Netherlands